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Old 09-21-2011, 05:58 AM #11
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Your choice of supplements looks good. Covers the mitochondrial bases. It may take time to get results, I'd give it 6mos.

I'd add in magnesium and fish oil...since both really help nerves heal. These are much less expensive than the others you have purchased.

If you really want to read about drug toxicity, see if you can find this book: Bitter Pills by Stephen Fried. I read this book when it came out. It is about the damage his wife suffered from Floxin (which is not used much anymore, but Levaquin is chemically derived from Floxin!). She developed seizures that did not resolve from that drug. When this book was written, some knowledge about CNS toxicity was known about the fluoroquinolones. But now, so many people have been damaged, the net is filled with sites, and blogs about it.
You might find this book "used" on Amazon for a very low price.
http://neurotalk.psychcentral.com/sh...hlight=magnets
This book goes into how difficult it was to get a black box warning or ANY actions at the FDA at the time when postmarketing severe drug reactions occur. It is really an eyeopener!

Amazon:
http://www.amazon.com/Bitter-Pills-I...6602485&sr=1-1

I often buy used books from their alternate sellers listed, and often they are really a "deal" and all of them so far have been in excellent condition!

After reading this book, you may loan it to your doctor! At this time doctors really will not speak against another doctor's treatments. So response to YOUR questions will reflect that tight lipped factor. They will NOT admit to an error of judgement and risk a trial or liability action.
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Old 09-27-2011, 08:37 AM #12
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Default status of supplemental regimen while I await next appointment

MrsD, thanks again for the info. This is an update while I wait and prepare for my next appointment on Oct 28th. I will pursue the possible Levaquin cause, my upper end TSH numbers, A1C testing, and small fiber function, with him. He said he will focus on the small fiber function which hopefully will lead him to those potential causes. In the meantime I started the B12 methyl-cobalamine on Sep 16 (5000 mcg/day) and quit on Sep 21 because of palpitations. The palpitations stopped 22 Sep (unless I was just so sleep deprived I slept through them). I restarted the B12 on Sep 23 thinking there might have been some other reason for the palpitations but, unless it’s all in my mind, they started again and I stopped the B12 again yesterday. Can the palpitations be due to something else? thyroid? It’s frustrating because even after a few days I could sense my nerve condition was improving slightly with the B12, not as much pain, less numbness for longer periods. The nights after I stopped taking the B12 were bad with sharp pains in my toes, hot feet. I’m thinking of starting B12 again but in 1000 mcg/day. It was working with 5000 mcg, but I couldn’t sleep with the palpitations. I started fish oil on Sep 23. I applied the CVS Epsom Lotion to my feet twice in the past week and it makes them feel better. I want to begin the ALA, ALC, or Ubiquinol but I haven’t yet because I didn’t want to attribute any side effects to the wrong supplemental, if that makes sense. I wanted to get the B12 working without the palpitations. I’m tempted to start taking them anyway because the sooner I start, the sooner I hopefully would see results.
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Old 09-27-2011, 08:59 AM #13
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It is difficult to say. The B12 does energize some people.
If you have an underlying cardiac condition, it may be too much.

Stay off the B12 for a week, and see if you get the palps any time during that period. Take one tablet (swallow) and see what happens. If this is the 5mg, try cutting it in half?

I do see my cat Oreo getting pretty lively on her new B12 regimen too. She was tentatively diagnosed with lymphosarcoma yesterday at a tertiary vet clinic. Samples of cells were aspirated from the tumor and sent off. Her prognosis is grim now.
But the vet there said to continue her B12 as I am doing. 5mg methyl orally twice a week. She weighs 8 lbs. The vet had heard a murmur before the B12, but now the murmur in the heart seems silent. She seems more involved in life since I started her. (she had a parasite treatment, and they think her intestinal absorption of B12 was impaired by that).

The heart will race when your blood pressure falls. That can happen with some blood pressure drugs, esp the ones that dilate blood vessels. This is a compensation for the falling blood pressure.

But it is hard to say what is going on with you. You may only need B12 2 or 3 times a week, or not at all. You may not need 5mg either. So go a week without and see if you have the palps.
If not if you choose to restart start at 1/2 of what you were using before, and see what happens.
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Old 09-27-2011, 06:15 PM #14
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MrsD. I’m sorry about your cat, Oreo. I never liked pets until my wife talked me into bringing home a puppy, Lizzy, about 5 years ago. I love dogs now and don’t know how I ever lived without one.

I’ll go without the B12 for a week per your suggestion. Then I’ll pick it up again at 1000 mcg every other day instead of 5000 every day and see what happens. I have no personal or family history of cardiac or blood pressure problems. Not taking any medication for anything. I was in great health until this PN business started close to 2 years ago now.
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Old 11-03-2011, 07:01 PM #15
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I had another visit to the neurologist on Oct 28th. My PN had progressed to lower left leg and left side of face since my telephone consult with him in mid Sep. It’s not severe there yet but noticeable and comes and goes. I already had the numbness and occasional sharp pains in my feet and hands with hot feet at night. While waiting for Oct 28th to arrive, I began B12 (methylcobalamine) at 500 mg/day in mid September (reduced it to 100 mg every 2 days because of palpitations and insomnia at night). I added the following supplements on Oct 1st: ALA 600 mg/day, ALC 750 mg/day, Ubiquinol 100 mg/day, and Fish Oil 3000 mg/day. I noticed improvement in pain and hot feet just a few days after I started the B12 and more improvement by mid October after the others supps presumably kicked in. I still have mild numbness in the feet but hot feet and occasional sharp pain are noticeably reduced. Thank you Mrs D. I told all this to the neurologist on Oct 28th. He said the B12 and ALA may be reasons for the relief but he didn’t see the usefulness of Ubiquinol, ALC, and Fish oil related to my PN. I will keep taking them nonetheless. I asked him about the possible relationship of some joint pain I’ve been having (at the bases of my big toes and thumbs). He said that shouldn’t be related to PN but I noticed he ordered a Rheumatiod Factor test. He also ordered the following tests that were not ordered the first time around (post #1). I took these tests earlier this week and I’m to call him back in one month for a discussion of results, apparently because it takes time for some of these to come back:

1. SPEP/IFE (serum protein electrophoresis/immunofixation electrophoresis) Paraproteinemias – amyloidosis, Multiple Myeloma
2. 2-hour GTT (Diabetes mellitus/impaired glucose tolerance)
3. B12/MMA (methylmalonic acid)
4. B6 (pyridoxine)
5. Rheumatoid Factor
6. Vitamin E

I requested additional testing for thyroid disorder since thyroid can be a PN cause but he said there was no need since my TSH was “within range”. My TSH is actually at the high end of the generally accepted range. I’ll keep the more aggressive thyroid testing request in reserve and push it again later. He also continues to discount the possibility a toxin caused my PN, specifically the Levaquin I took for 8 days back in Oct 09. He said there’s no way to test for a toxin and, besides that, he believes the symptoms would have gone away after I discontinued use. I’ll also keep that one in my hip pocket until I see the results of above tests.

I also visited my PCP yesterday for a heel bruise that hasn’t healed for two months, the joint pain I mentioned above, and the palpitations I’m having that keep me up at night and I believe still have something to do with the B12 and maybe also the ALA (I’ve researched side effects for those and one side effect for both is palpitations). I’m seeing a podiatrist for the heel bruise tomorrow. For the joint pain, the PCP said I should wait for the Rheumatoid Factor test results. For the palpitations, she agreed it’s probably just a matter of adjusting my supplement dosages. However, funny she did mention that it may have something to do with my thyroid and that more aggressive testing might be necessary! I’ll remember that. So my goal this month is to find a supplement dosage low enough to eliminate the palpitations at night but high enough to continue the pain and hot foot relief too. While in her office, she told me the B12 lab that the neurologist ordered had come back at 508 when last summer it was 339, so I attribute that to the B12 supplement I have been taking at 100 mg every 2 days.
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Old 11-04-2011, 05:51 AM #16
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I find that R-lipoic acid (ALA stablized) makes me hyper at 200mg a day.

It does not do that at 100mg a day however. When I started it a couple years ago, I had to start at 50mg a day.

Fish oil has anti-inflammatory actions and so if you have inflammatory issues -- some form of arthritis-- it is helpful.
I think some PN may be inflammatory, and hence that is why AlkaSeltzer with aspirin works for some PNers.

There is over a decade of research on ALA for neuropathies.

The carnitine and CoQ-10 help with mito issues, and improve energy production in the cells if the mitochondria have been damaged by drugs or toxins.Many anti-aging products and articles recommend them. It is very possible that our own synthesis of carnitine fails with time/aging.(just like everything else seems to!)

I hope you stopped the B12 before the testing. At least 3 days before ...so your reading would be more accurate.

I am glad for you that you are feeling better. It is obvious that you are healing in some way, so I'd keep your regimen up!
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